Amplifying the Patient Voice in Cancer Care

In cancer care, goals should be informed by what the patient considers to be most important. This is why our team at the Research and Training Institute is developing a new tool that can be used to measure what really matters to patients- Valued Outcomes in the Cancer Experience (VOICE™).​

On September 28th, 2018 the Cancer Support Community (CSC) presented new research findings on a study of more than 450 adult cancer patients and survivors at the American Society of Clinical Oncology Quality Care Symposium in Phoenix, AZ. Below is a post from our research leaders about the significance of their findings for people diagnosed with cancer and cancer care providers.

Time and again, we’ve heard from patients that no two cancer experiences are alike. While some patients may want to jump into the most aggressive treatment to face the disease head-on, others might want to prioritize treatments with fewer side effects. For some patients, efficacy of treatment is at the forefront of their minds, while others are most concerned about quality of life. No path is better or worse; we find that what matters more is the value patients place on these things and how that lines up with the care that they receive.

In cancer care, goals should be informed by what the patient considers to be most important. This is why our team at the Research and Training Institute is developing a new tool that can be used to measure what really matters to patients- Valued Outcomes in the Cancer Experience (VOICE™).

VOICE is a web-based, patient-reported outcome measure that consists of items representing themes such as practical matters, personal identity, independence, personal control, symptom management, cost of care, and support. For each item, patients report: 1) how important it is to them, and 2) their sense of control over it. This allows us to identify users’ current priorities and determine how much control they feel they have over those priorities. We are working hard to continue to develop and strengthen this tool to best support patients, and are excited to share some preliminary findings on patient priorities and sense of control.

What Matters to Patients?

In general, patients reported that items related to communication with their health care team and maintaining independence were most important to them. In terms of patient-provider communication, we have found that patients want their providers to talk to them in a way that is honest and easy to understand. Patients also value being able to make their own decisions and having the strength and energy to take care of themselves.

Where are the Gaps?

Many patients reported that they already felt in control of some highly-prioritized items including, for example, talking honestly with their health care team. However, in other instances there were meaningful discrepancies where patients were identifying items that were very important to them, but that they did not feel they had much control over. These discrepancies were most apparent in areas such as fear of cancer recurrence and end of life planning, fatigue, and financial worries.

What Comes Next?

Our preliminary findings show how cancer patients can experience meaningful differences between what matters to them and what they’re able to control, within the context of their cancer experience. When integrated into clinical practice, individual results can be used to inform overall goals of care and can highlight areas where providers can intervene and refer patients to supportive services in order to facilitate a more patient-centered and integrative cancer experience.

We are excited about the results we’ve seen using VOICE™ so far, and will be working to integrate it into clinical practices soon to continue to learn about the real-world implications of amplifying the patient voice!

At the Cancer Support Community, innovative patient-focused research like VOICE™ is at the heart of what we do. We can’t accomplish this without insight from patients, and that is why we ask patients, survivors, and caregivers to share their stories by participating in the Cancer Experience Registry, a free, confidential survey that is open to anyone who has been diagnosed with cancer or provides care to someone with cancer.